Mom Has Alzheimer’s: A Son’s Journey

Dwayne Clark, CEO and founder of Aegis Living, was confronted with the reality of Alzheimer’s disease. While the disease has been an integral part of his senior housing livelihood for years, watching his mother battle the disease offered him an entirely new perspective; a first-hand view of the suffering and transformation of a loved one. His poignant account is documented in his new book, My Mother, My Son, and offers caregivers and those battling the debilitating disease a candid portrait of the myriad of emotions families face when dementia progresses.

I had the pleasure of chatting with Dwayne and am not surprised he already has a couple offers to make his book into a movie. His honest, personal account of a disease plaguing America is a must-read for those battling the disease. In fact, according to the Alzheimer’s Association, there are 5.4 million Americans living with Alzheimer’s disease, including one in eight older Americans—and that statistic is expected to more than double in the next 40 years. And since it’s the 6th leading cause of death in the U.S. and the only cause of death among the top 10 in the U.S. that cannot be prevented, cured or even slowed—the nation needs to begin preparing for the Silver Tsunami. It’s apparent from his book’s many celebrity endorsements, including Susan Sarandon, Dick Van Dyke, Ed Asner and more, that Alzheimer’s makes people vulnerable; and the heartbreak of the disease needs to be discussed.

Confronting the Realities of Alzheimer’s

Dwayne has experienced senior care from both the professional and personal side. He comments on his experience confronting his mom’s diagnosis: “You don’t want to believe your mother has dementia. You think to yourself, ‘Maybe she’s dehydrated or maybe there’s a medication conflict.’” Being a customer in his own business was a big “ah-hah” moment for him.

One of the first signs that something was wrong was his mother’s dysphasia—or the inability to speak, understand words or swallow—a symptom of dementia. He found himself getting irate as he visited her in the dining area of her senior living community and witnessed her having difficulty swallowing chunky chili and cornbread. “Why weren’t people thinking about this?” was one of his first reactions. Accommodating dietary needs is common, not to mention, crucial, in senior living environments.

Having the personal experience with Alzheimer’s really ‘hit-home’ for the senior living entrepreneur. He notes, “It’s not just a disease of the old. It’s an actual physical condition that affects the brain.” From a dignity standpoint, Dwayne made it a point to never forget that his mom still lived within her body.

Alzheimer’s: More Common than People Think

Alzheimer’s is becoming the #1 epidemic in the U.S.—surpassing heart disease, cancer and AIDS. Public awareness is crucial, according to Dwayne, as there are more early-onset cases in tandem with the aging boomer population. Today we’re much more sophisticated from a diagnostic standpoint, so that helps, according to Dwayne, but some of the causes are still a mystery. Whether it is cell phone transmission, computers, food additives or the fact that people are just living longer are all possible causes. Genetics definitely plays a role. “We live in a different world than we did even a decade ago and we really don’t know what may be causing it. Nothing has been proven.” But whatever the cause, Alzheimer’s and dementia is actually a plaque that forms on the brain that slowly takes over its’ victims minds and bodies. Sounds like science fiction, but it’s actually real life individuals and families dealing with the disease.

Educating The Public about Alzheimer’s and Dementia

A rendering of the front of Aegis on Madison’s memory courtyard – Designed to look like Madison Park of the 1950′s.

When asked what the government can do to help cure Alzheimer’s disease by 2025, Dwayne identifies funding as the issue. “It all starts with funding. We need to recognize the problem, get funding and do research… We need to embark on stem cell research and work on preventative cases.” So far there’s just not enough funding to keep up with the pace the disease is spreading. Dwayne notes, “There needs to be a huge emphasis on finding a cure. We need to look at innovative opportunities to cure the disease. The link to chemical depression and the onset of dementia needs to be studied.”

Dwayne has also used his personal experience with the disease to help educate the Aegis staff. When situations happened with his mother’s disease (such as the chili episode noted above), he would send out an email to staff for learning purposes. Feedback he received from staff was that the information was so helpful that Dwayne should start a blog. This was the catalyst for his Alzheimer’s voice—first he started a blog and then he started a book—all over the course of seven years. He discovered that by sharing personal stories, people opened up. “You have to be vulnerable for people to listen. If you discuss how you’re feeling, how your family is feeling—if you discuss the loss of dignity and the pain—more people open up and want to know. Making that personal connection is important.” By creating a dialogue with people, Dwayne began connecting with listeners, readers and activists.

Nothing Prepares You for Alzheimer’s

Dwayne was very honest about his experience with Alzheimer’s. He remarked that no amount of experience or professionalism could help prepare you for the guilt you experience. His mom had told him, “If you ever put me in one of these places [senior living facility], I’m going to haunt you for the rest of your life.” But the reality was that his mom needed more care than his family could provide outside of senior care. He had tremendous trepidation moving his mom to Aegis, but notes that it came down to the following:

Senior living provided better care than being home with his sister, the main caregiver.

His sister was getting emotionally and physically exhausted.

His mother was only going to get worse, not better.

After going back and forth for two years, his family finally made the decision to move her to Aegis. “My sister literally wanted to move in and live with her. Mom had lived with her for 23 years and they were like Laverne and Shirley. It was so hard.”

New Innovations in Senior Care

A rendering of Aegis on Madison’s memory courtyard, designed to look like Madison Park of the 1950′s.

When asked about innovations he’s seen in Alzheimer’s treatment and care he’s excited about, Dwayne became an excited little boy. “I’m going to be honest. We are leading the nation in innovation.” He then began discussing new Aegis assisted living and memory care communities’ in-the-works. “We are building a community between Madison Park and Capitol Hill, scheduled to open fall of 2013. We went back to the Madison Park of the 1950’s and are creating the look and feel, for our memory care residents, based on that time as seniors with dementia resort to long-term memories.” In the courtyard, there will be a Thunderbird, grocery store and housing structure—all of the 50s façade, with help from contractors who have worked with Disney. Residents will be able to walk in an old-fashioned neighborhood surrounded by benches, a bus stop and gardens. Some of the amenities will include a beautiful grand parlor, elegant dining areas, apothecary and brain gym. And one of the nation’s first Alzheimer’s café s, the Queen Bee Café, will offer a caregiver support community.

Aegis Living at Marymoor, opening summer of 2013, also shows senior care pioneering with the thematic courtyard. The peaceful setting includes a model airplane flying field, walking paths and concerts during the summer. Our memory care residents will have the opportunity to relax in a lodge-like setting with a canoe, camping shelter, airstream trailer and beautiful Pacific Northwest scenery. Dwayne notes that he wants residents to “experience vacation at their disposal.”

A Senior Care Journey

Dwayne has used his industry expertise and personal experience to connect with families and educate the world about Alzheimer’s. The response to his book has been incredible as people are emailing from all over the world. Most recently, in fact, Dwayne received emails from Argentina and Slovakia—reminding us that Alzheimer’s is a world-wide epidemic. Dwayne’s mission to provide excellent senior care and his commitment to the fight against Alzheimer’s is apparent in both his work as CEO of Aegis Living and in his voice in his new book, My Mother, My Son.

About Dwayne Clark

Dwayne J. Clark is the founder and chief executive officer of Aegis Living. With more than 25 years of senior housing experience, Dwayne is nationally known for the quality of projects he manages, as well as, his innovative flair. He has been involved in the development, construction and/or management of over 200 senior housing projects. His new book, My Mother, My Son, is a true story about a son’s journey with his mother’s struggle with Alzheimer’s. All proceeds from the book go to the Alzheimer’s Association and Aegis Living’s Potato Soup Foundation.

About the Author

Dana Larsen is a senior living writer whose mission is to educate and empower caregivers and equip them with the resources and knowledge they need to not only care for their elderly loved ones, but also care for themselves.

On a personal note, Dana is mother to two bright-eyed, zealous children and helps as a caregiver for her vivacious and quirky 88-year-old grandmother who suffers from Alzheimer's. Her passions include dancing, yoga, traveling, good food and the arts. She graduated with honors from University of Washington with a degree in English and Communications and achieved Technical Communications Certification from Bellevue College. View Dana's Google Profile.